Living with Cancer in the Internet Age

Partially Frustrated

Today has been intense. I’m writing this from my chemo daybed at Hopkins and “intense” is simply the best word for it.

The view from my chemo daybed

I slept poorly again (though better/more than the past several nights at least). While getting ready this morning I struggled with emotions about our country, as well as my own ability to create change, plus my frustration that this is my life now.

We did get to Hopkins on time and were able to see the amazing phlebotomy nurse who somehow accesses my port painlessly. Afterward, while (we thought) my Olaratumab was being prepped, we used the two hours to get a good lunch.

We decided to Lyft to Atwaters and stroll back. I felt absurd taking a car less than a mile, but lunch was delicious and the walk back afterward was exhausting at just over half a mile. I won’t always let myself indulge like I did today, but it made a huge difference in lifting my spirits.

That turned out to be a good thing. After returning and checking in early for my chemo, one of my nurses, Kim, came out to see us. My platelets and white blood cells were low and they likely couldn’t give me my treatment today. I held it together while she made it clear she understood how hard this was and that my oncologist’s PA would be coming up soon to talk with me.

After Kim left I started crying. Not sobbing in the waiting room, thankfully, but sniffling and unable to stop little tear drops dripping onto the mask Kim handed me to keep me safe from other people’s germs. Honestly, all that kept me from embarrassing myself and bawling was reminding myself of the panda masks a friend just sent that made me smile despite my frustration.

I’ve been trying so freaking hard so the possible delay and quarantine on top of being exhausted was too much for me to be stoic, let alone optimistic. This regimen was supposed to be easier. Since Friday I’ve been pushing myself as hard as I can and walking a ton every day, but it still wasn’t enough. My best wasn’t enough.

People talk about not wasting time, but every delay or quarantine feels like I’m missing out on life. I’m not greedy. I don’t want wealth (though, I’ll be honest, being able to afford Lyft and delivery makes cancer easier). When you boil it down, I want what any sane person wants: to spend time with the people and pets I love; to help animals and people; to feel like my choices have some effect on my own life (even if I know a lot is out of my hands); to live up to my potential and use my privilege for good; and to find moments of joy, silliness, laughter, and delicious food along the way.

Delays and quarantines feel like they deny those to me. I know that literally nothing I do can influence how quickly my blood recovers from chemo. I can support my body and do my best, but ultimately last week involved poison coursing through my veins. That has an effect.

Thankfully, because today’s treatment is just the antibody drug, not the traditional chemo drug, my oncologist decided it was safe for me to receive treatment today. I still need to go for more bloodwork on Monday to see if my levels have improved. I got permission to still see my family thus weekend, but had to promise lots of handwashing and that no one felt ill (plus that I’ll mask up before hugging my nephew). I’m not supposed to go to church and may have to skip a luncheon I’d been excited to attend.

So, it’s not full quarantine but partial, so I guess I’m partially frustrated, but trying to look on the bright side because that’s what I do.

I have an awesome care team that took the time to talk with me, my husband has been a rockstar, my family is willing to shift tomorrow’s dinner so I can still participate, I’ve got some great books to read, and I have incredible friends. Plus, the best part, within a few hours of writing this I’ll be home with my beloved cat 😉

I know the frustration of not being able to get treatment because of low blood count. It happened twice. At first, I felt helpless but that frustration, instead of stopping me, it energized me to move forward. The first time, I researched the affects ANY of the foods I was eating might have on the counts. I found the quinine in the tonic water I was drinking so I could get enough liquid could have had a negative effect. So I axed that. The second time, they were threatening transfusion so I ate venison three days in a row and my count rebounded enough.

I’m glad you’re able to see your family. Those good vibes are so healing.

As for the country, I found this quote when I was sorting some things after the election. I’ve come back to it for myself many times and passed it on to many as I do for you, now. “When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it … always.” Mahatma Gandhi